Spotlight on: Patient Engagement

As the second feature in our spotlight series, we’re shining a light on Patient Engagement. A critical component of the MSSU, patient engagement is the act of meaningful and active collaboration in governance, priority setting, conducting research, and knowledge translation.

What is patient engagement?

In the Strategy for Patient-Oriented Research (SPOR), Patient Engagement (PE) is about building partnerships between patients, researchers and other stakeholders to conduct health research. People who have experience living with a health condition like cancer, or an issue like caring for a family member during the last year of their life, gain first-hand knowledge and experience that makes them experts. Patients can bring this expertise to research teams to supplement the knowledge and training of researchers studying these issues. Combining the expertise of researchers and patients can result in research that makes real changes in the treatments and services that patients receive.

What can PE look like?

SPOR emphasizes building towards PE that sees patients contributing to all phases of the research process as active and equal members of the research team. This engagement should be meaningful, which means all parties contribute to the partnership, learn from and with each other, and gain something of value from the work. PE can also include other kinds of activities, and patients may engage with researchers in a variety of ways. Patients may work with a team during specific phases of a project such as data collection, or sharing findings. Patients may act as advisors to a research group, or the committees that direct activities of an organization like MSSU. Patients may also be involved in events like workshops, world cafes or community forums. The key is that patients contribute not as research subjects but rather as experts, advisors or partners who help to direct the course of the research.

Why does PE matter?

Patient engagement is important for many reasons. PE acknowledges that people with experience of a health issue should have a say in research that studies that issue. By working together, researchers, patients and other partners combine their unique knowledge and expertise to address complex challenges in research. For example, patients can help in identifying research questions or outcomes that would make the most difference to their health and well-being. Patients and researchers can work together to plan research activities that are relevant, interesting, and encourage participation.

PE from a patient’s perspective

When asked about the importance of patient engagement, a MSSU patient advisor said the following:

“PE is an opportunity for me to give back to and improve the health care system upon which I have relied heavily my whole life. Although I have received timely, competent care, I have also seen a lack of understanding of my lived experience and the issues that matter to patients like me. Through PE, I can advocate for research questions that might not even occur to researchers who do not have the lived experience of my health issues. In the end, I believe that answering such questions can improve care for patients.”